"0.4%" — Sasha

Sasha's cancer was never supposed to be found when it was.

Invasive lobular carcinoma — the second most common form of breast cancer — grows not in a lump, but in sheets and lines of cells. It only shows up on mammograms about thirty percent of the time. Sasha's first mammogram had come back clear. It was a chance ultrasound, performed alongside an unrelated finding, that caught a shadow no one was looking for. A needle core biopsy confirmed it: invasive lobular carcinoma, grade one.

Then came the MRI. What had initially looked like 1.5 cm turned out to be 6.5 cm. And the pathology revealed something rarer still — Sasha was HER2-positive, making their cancer triple-positive ILC. That combination represents just 0.4% of all breast cancers. There is only one specialist in the country who studies it.

What followed was six rounds of chemotherapy, a planned bilateral mastectomy, and a year of treatment that Sasha has approached with a scientist's precision, a community organizer's sense of equity, and a parent's fierce honesty.

In this conversation, Sasha and Dr. Randi Paynter discuss:

-- Why invasive lobular carcinoma is so frequently missed — and what that means for outcomes

-- What it's like to be a 0.4% patient navigating a treatment protocol designed for a different cancer

-- The real cost of chemo — $55,000 per session, $2,000 per shot — and what happens to people without good insurance

-- How Kaiser Permanente's integrated care model changed Sasha's experience of diagnosis and treatment

-- The social model of disability — and why cancer is one of its most clarifying examples

-- What actually helps when someone you love is going through treatment (and what doesn't)

-- Giving a 13-year-old clippers, green hair dye, and a moment of control in a scary year

-- How Sasha has used public storytelling — through CaringBridge and beyond — to process, inform, and connect

Sasha is a non-binary business owner and parent living in San Francisco, California. Their episode is one of the most clear-eyed and generous conversations you will hear about what cancer asks of us — and what we deserve to ask of the systems meant to care for us.

-- Go to ChangedByCancer.com for show notes and episode links

Resources mentioned:

-- Lobular Breast Cancer Alliance — lobularbreastcancer.org

-- CaringBridge — caringbridge.org

-- The Emperor of All Maladies by Siddhartha Mukherjee

-- The Cancer-Fighting Kitchen by Rebecca Katz